My latest fashion accessory is a Holter monitor, which is going to chart my heartbeats for twenty four hours. So I have should end up with a graph that shows the pauses and lurches it's been doing for the last few days.
I'm deep in the American medical system now, piling up specialists like crazy. But my cardiologist is a gem. During the consultation when I was in the ER, he prescribed beta blockers, and I had a day and a half before seeing him in his office to get worked up about not wanting to take them, and prepared myself for the usual fight. But no! He said now that he'd gotten a look at me -- and seen my more usual low blood pressure readings -- he changed his mind. No meds. Hoo-ray.
The gem of a cardiologist explains my lurching heart as being irritated by something. Could be the antibiotics, could be bacterial die-off, could be, well, anything. He says I can have as many as HALF of my heartbeats be irregular, and be all right. But it depends when they come. If they're all in a row, one after another...that's not good. So we want the irregularity to be irregular. As long as that's the case, eventually my heart is likely to settle down and cut it the heck out.
Meanwhile my Lyme doctor has stopped the antibiotic/antiprotozoan cycle I was in the middle of, and raised dosages of Neurontin and Ativan, in an attempt to calm my central nervous system down. I would have to say that's working, because right now, as I type, I am not actually awake. I am in some drifting drug haze somewhere apart from absolute consciousness. My heart seems to be doing fewer backflips. Or maybe I just can't pay enough attention to notice. I look like something from Lost in Space, and I am exactly that.
I've been taking Mepron since the beginning of October. It's atovaquone, an anti-protozoal, meant to kill off the Lyme co-infection Babesia. As you can see from the pictures my son took, it's not exactly tasty. In fact, it's like eating paint -- it's gloppingly thick, fluorescent yellow, and the taste is profoundly bitter with a gloss of artifical sweetener and artificial fruitiness.
In other words, it's absolutely horrible. And a bottle costs $1000.
But! I am responding to the new protocol. Babesia likes to hang out where there are red blood cells, and I've been having symptoms in my spleen and heart as it dies off. I've had some very good days mixed in here and there which are keeping me hopeful.
The bad days are still very bad. Trying to ride this edge of killing as many bugs as my body can handle but no more -- it's tricky. Some days I think it's too much, I've gone too far. I'm getting stabbing pain all over, I can't think straight at all, my heart is misbehaving, and I'm under a blanket of nausea. Those days I spend time in Epsom baths, eat a lot of probiotics, take Marinol, and play a lot of World of Warcraft.
But then the holiday week comes up and I get a normal day, or two -- and I mean, I feel a glimpse of what it must feel like to be all the way healthy, and I don't even know how long it's been since I felt that way. Maybe never.
I meant to make this blog more of an accounting of how the treatment is going, week by week. But I just haven't felt well enough, or clear-headed enough, to manage it. I'm hoping this is a bad hump to get over and things will be easier soon.
For the record, the protocol this cycle is Mepron, 10 capsules of artimisinin (from wormwood. I had a small moment of trying to convince myself it was capsulized absinthe and I was really in Paris in 1890, but that, uh, didn't work.), doxy 500 mgs BID, zith 500 mgs BID, nattokinase. That's MWF for two weeks, with Flagyl 500 mgs BID thrown in on the last two days of the cycle.
This Lyme treatment ain't for sissies.
